Lu 177 PSMA : Three questions I've... - Advanced Prostate...

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Lu 177 PSMA

TJGuy profile image
15 Replies

Three questions I've been having.

Concerning if positive for PSMA scan (I was) does this mean ALL of your prostate cancer cells will be positive for PSMA? That none of your prostate cancer cells will be negative for PSMA?

Question two, I read Lu 177 usually limited to max of 6 treatments. Is this a lifetime limit? Or could you go perhaps year or years and then if PSA rose again could you undergo the treatment again? Can you exceed 6 treatments, meaning ecentually start the clock over so to say? Or do you have to be very strategic in your timing of when to use your limited treatments? The concern being the kidneys?, saliva glands? Or other or both?

Question three, I didn't show definitivly on PSMA scan or Choline scans at PSA 1.5 but did when my PSA rose to 3.9. Now on Lupron which will drop PSA to zero or so for radiation to pelvic nodes where cancer was found. Does LU-177 work when on Lupron and PSA is depressed to low levels?

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TJGuy profile image
TJGuy
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GP24 profile image
GP24

If you are PSMA positive, you can still have a few negative cells too. If you compare the PSMA PET/CT and the FDG PET/CT you may see mets on the FDG PET/CT which did not show up on the PSMA PET/CT. This are the negative cells. This is quite rare though. I would get the treatment in any case, to attack about 90% of the cells. That is better than no treatment.

There is no fixed limit at six cycles, this is an individual decision and also depends on the dose applied. The damage to e.g. the salivary glands will add up, so I would try to get just the cycles I currently need to control the disease. Long gaps between the cycles will probably help too. It has been observed that further cycles may not be as effective as the first cycle.

ADT will lower the PSA value but the PSMA expression in the long run only. Right at the beginning of the ADT the PSMA expression may even increase.

Tall_Allen profile image
Tall_Allen

Good questions;

1- Unfortunately, PSMA expression has been found to be heterogeneous, even within the same tumor. Lu-177 is a beta emitter, which has a comparatively long range. Perhaps the beta particles will kill those nearby cells that do not express PSMA. There seem to be changes over time too; some of that may be due to long-term ADT (see #3), and some due to natural evolution of the cancer cells. Of couse, there will inevitably be some selective pressure as cells not killed by the Lu-177-PSMA-617 treatment proliferate.

2- The above means that some benign cells are killed too. Perhaps with time they will regenerate. I really don't know if there is a lifetime dose limit - I would guess there is - at some point benign cells won't be able to regenerate, especially worrisome is kidney dose. I know Scott Tagawa found that dividing up the doses was less toxic.

3- Actually, there is a temporary increase in PSMA expression with Lupron followed by a long-term decrease.

preciousbz1 profile image
preciousbz1 in reply to Tall_Allen

Hi tall Allen:

What does Scott Tagawa found that dividing up the doses was less toxic mean ??

Thank you

Tall_Allen profile image
Tall_Allen in reply to preciousbz1

It means he did a trial where he gave men a larger dose vs giving them the dose split up into smaller portions. He found that several smaller portions was less toxic.

preciousbz1 profile image
preciousbz1 in reply to Tall_Allen

thank you

Fairwind profile image
Fairwind

The only way at the moment to get Lu-177 treatment today is through the "Vision" trial. THEY will decide if you will get it, how much you will get and how often you will get it..The trial has very strict requirements and procedures. It's not cut and dried. Patients getting the Lu-177 compound are carefully monitored and the treatment administered so as to avoid negative outcomes. Have they dropped the requirement that you must have had a least one round of chemo before they will consider you for Lu-177 treatment ? Actually getting into the Vision trial and being treated with Lu-177 is not as easy as it may sound..

TJGuy profile image
TJGuy in reply to Fairwind

Hey thanks for responding, So I looked into going overseas (Germany) via Booking Health this summer and was approved for PSMA Lu-177 and potentially actinium 225 as well based on PSMA scans from 2018. They were ready to schedule me, but I said I'd be making all decisions with my Mayo Dr input.

So after that I received new scans in 2019 from Mayo Clinic, with Mayo recommending pelvic radiation to lymph nodes in pelvic and lower abdomen to hit the lymph nodes that showed positive on PSMA, Choline, and MRI, all pretty much consistent.

PSMA showed the cancer the brightest, Choline seems to match the PSMA scan and possible found another or two. MRI seems to agree with both scans. I plan to go through the scans with Mayo radiation at my next meeting.

The MRI was pelvic/low abs area only. While the PSMA and Choline checked the whole body (eyes to mid thighs). Good news all cancer easily targetable, Dr's considered it cut and dry.

Dr's were very positive about chances for eliminating the cancer thru radiation, I meet with radiation team next week to discuss.

So at this point I'm considering using my insurance (all out of pocket already met) this year for radiation to Pelvic region, and being on ADT for 18 months or more.

Then if necessary trying the PSMA lu-177 and/or actinium 225 if still show PSA after radiation.

Perhaps by that time there might be more info on both, it could be approved in US, or still go overseas for it, pay cash if necessary.

blueCello profile image
blueCello in reply to Fairwind

As you can read below, Lu-177 treatment is available for the medical tourist to pay for in Germany. My husband just finished infusion one of four. He called the following morning, while in confinement for three days, to say he felt great! Still does. His bone lesions that were very painful appear to have disappeared. Only reaction was a very very hot head (no hair loss luckily) and the team put an "ice helmet" on him for several hours to cool him off. He was also put on Xtandi for a period of time after and will need more a week before infusion two. We now call him Radio(active) man.

paige20180 profile image
paige20180 in reply to blueCello

Awesome news! Very happy things are still going so well❤️

ronnie1943 profile image
ronnie1943

Yes, my husband was to be in the the "Vision trial" Had to have bone scan,ct scan, blood wk. repeated,It all had to be with in twenty days of getting the Pet/scan. Singed all paper work ... We are in the suburbs of phila, we had to go to Gettsburg to get the scan for the PSMA.

The company sent a driver for us, we went, got the scan, back home in one day.. Well,my husband qualified for the trial, but was denied. We are still bummed out!! All the anxiety, etc, waiting to get the scan...we are still in the trial, just getting best of care. Put on Xtandi..

We were so hoping he would pass for PSMA. That we put it on the back burner that we could be denied. We knew it going into the trial that there was that chance.they say 66% are denied that qualify.. We have heard so many having such good results.

Sincere best wishes.

Lynn Pa.

ronnie1943 profile image
ronnie1943

Hi TJGuy.... meant the above post to come to you ?

Jackpine profile image
Jackpine

TJGuy,

I can only speak from my personal experience after completing 6 LU177 PSMA infusions. The number of infusions you receive is generally based on how you respond to the treatment (ie. Continued PSA decline or does it start to rise again). I also believe the max of 6 is dependent on dose, but also to ensure ability for cell regeneration as Tall Allen states.

I know some research is showing promising results for using LU177 PSMA on low PSA PC. Some papers have been posted on the site.

I did not have any of the side effects but also drank large amounts of ice water before, during and after the infusion.

Results: PSA at start of treatment 110 after 5th infusion 0.4 after 6th 1.0.

3 months after treatment PSA 4.6 and two Mets in rib and hip that we treated with SBRT. Prior to treatment I had Mets to numerous to count so most have resolved.

Stegosaurus37 profile image
Stegosaurus37

I'm scheduled to get my 4th Lu-177 infusion in 3 weeks.Side effects so far? For the first several days after the infusion, no side effects; feel as fine as it gets these days. Then about three days of total exhaustion and then back to feeling OK. My liver and kidney numbers are normal. Last bone scan showed "significant" and "considerable" increases in bone mets. Next bone scan next Wednesday so we'll see, though my alk phos numbers are still increasing.

My 4th-infusion evaluation is scheduled the day before my 4th infusion is scheduled so it looks like I'll be continuing on the VISION trial no matter what the bone scan says.

You have to remember Lu-177 has a very short shelf life and they have to manufacture the infusion just for you and right before you get it. (Out of pure vulgar curiosity, I'm going to try to find out what the manufacturing process is.)

You asked about repeating the infusion procedures. There are established radiation limits for specific periods as well as a lifetime limit. How the Lu-177 infusions fit into those limits is a good question. I don't know the answer to it.

j-o-h-n profile image
j-o-h-n

Can you tell a little more about yourself? Age, Location, Gleason score, Doctor's names(s)?

All information is voluntary but it helps us help you and helps us too. Thank you.

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 09/05/2019 8:43 PM DST

Godblessus profile image
Godblessus

I was treated in Germany 2 months ago... psa 16 to 2.1

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